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Friday, February 12, 2010

Parents as "teachable moments".

We live in a city that is home to one of the nation’s top pediatric hospitals; it’s one of the reasons why we chose to move here nearly 2 years ago. It also happens to be a teaching hospital, which I know has many rewards, but also its downsides.

My son was recently evaluated by the psychologists at this hospital, and then later diagnosed with autism.

I quickly realized that the evaluation would be conducted by a student (only 1 year away from her Ph. D) and supervised by one of the clinical specialists. She spent about 2 hours with my son in a very small, bright room with nothing other than a table and 2 chairs and a few toys. She had stickers on hand for reinforcements while her supervisor watched from the other side of the 2-way glass mirror. After escorting Ethan to the testing room, I was kindly told to wait in the lobby. That’s fine, but I would have liked to tell her that she picked the wrong toys, and that he actually finds stickers rather uninteresting.

I knew she was doing an IQ test, but I wasn’t aware (because I hadn’t thought to ask) that it was the Stanford Binet. Ethan is deaf and used an interpreter during the evaluation. The fact that the IQ test they chose was inappropriate for a deaf child could be a whole different post unto itself.

I’m no stranger to hard news when it comes to my son, and driving to this appointment I prepared myself for the inevitable. This is what I was not expecting:

The student and the supervising psychologist met me in the lobby and then escorted me to a tiny room with a 2-way mirror. She and I headed into the room while her supervisor sat in the next room to observe. I gathered that he was observing how she broke the news (and there was plenty of it), and how she responded to my reaction. This felt more like being in a simulation than the real thing. I felt reduced to lab rat status, not parent of a special needs child who was about to become even more special needs.

She led the discussion with the data collected about his IQ, and then began to defend their findings before I had a chance to respond. She spoke repetitively about how they feel they got an accurate view of his abilities since they had an interpreter and used stickers for a reward.

Stickers are something that he sees at every single doctors appointment or therapy visit and he always just walks right by them. As far as the interpreter goes, Ethan had never met this person and had no prior experience with using an interpreter as he attends a deaf school where everyone in his environment signs. I think the use of an interpreter was pretty abstract for his little 4-year-old mind to comprehend.

I can’t help but wonder how the results might be different if I’d been involved in even the smallest way in setting up the assessment. I didn’t share these thoughts with her; instead all I could do was ask questions. Some of my questions were apparently tough because she said that no parent had ever asked them before and she’d address them in the best way she could, but that her supervisor would also need to weigh in.

Yeah, if he were in the room to answer my questions that would be Awesome! But he can’t because he is instead being oddly voyeuristic and watching us both flounder from the other side of the funhouse mirror!

I was seriously thrown off guard. I was in shock over the IQ data and I was speechless over the way this whole thing was set up. I had too many questions flying around in my head to adequately deal with the situation and though I remained very calm, I did at one point ask her to pass me a tissue. But never did I once put her in a position where she should have felt the need to defend anything, and that was probably my mistake. Some of what was said was indefensible. Yet somehow she took a defensive stance very early, probably because of her prior experiences with other parents being totally freaked out.

By the time we got around to discussing the autism diagnosis, I was really glad to be rolling a voice recording of the session because the words just all started to blur into one big hazy fog. I am only aware of what was actually said because I’ve played it back a few times. In so doing, I’ve been reminded that the supervisor left his post to come into the room to answer a question or two, only to duck out and back into his sneaky spying spot.

I don’t think this is in any way appropriate. It’s fine to hide in the “spying spot” if you’re assessing a patient’s behavior, but I find it morally and ethically reprehensible to sit in that room on the other side of the 2-way mirror and watch while a parent is given life changing emotional news.

As long as I’m such an integral part of her training, then why wasn’t I offered a chance to fill out an evaluation form from my point of view? I guess the perception of the family member just isn’t valued in this particular setting.

I’m going to contact our family relations division and see what can be done about it. I don’t mean to tattle or exact revenge, but if my complaint can ensure that no other parent ever has to sit in that totally surreal moment with a complete stranger watching through the glass, then it’ll be worth the time.

Heather!!! That is horrible. I am so sorry. Whether you feel the diagnosis is correct or not, I would ask for a retest, in a PROPER environment with the proper supports in place for him. You may walk away with the same result...but it would at least be one you could feel secure in...unlike this.

I've thought about it Kyla, but not sure I want to put us through this process again. I will have the retest his IQ when he's reached a stable IQ age as I really put no stock in that test whatsoever. I asked her how a child who is reading at age 3 could be in the profoundly low range and her response was that "most kids with autism test in this range" and "many autistic children have an area that they really excel in" What I fail to understand is why they think they can get an accurate IQ from a child on the spectrum in the first place.

What a horrible experience; the way they did it sounds counter-intuitive on many levels. This is not family-centered care, as I would define it.Do you have a regular social worker at this hospital, or a child-life worker, who knows your child and your family, who can be an advocate for you? Or is there a dedicated patient-parent advocate? There should be.I don't know how it works at your hospital, but Katie was treated in a teaching hospital, too. I learned that I had the right to refuse a resident and wait for a certified doctor, and I exercised that right. You are the expert on your child, and I encourage you to find out what your rights are. No one should go through such heartless, "clinical" treatment; when a caregiver is defensive, my antenna goes up. I hope you won't despair, and will bounce back to do exactly as you said, and report how awful it was. They can learn from you. Again, I am so sorry that you were put through this experience. Bless your heart and your dear son!

My jaw is hanging agog at this scenario. I can only echo what Karen wrote about hoping you do in fact write that letter. It's not "tattling" at all; you and your son were there as patients and there IS a patient's bill of rights at ALL hospitals. In fact, they are usually available online —often somewhere with all the pre/admission information. Doesn't matter if you were there as outpatients in a clinical setting; the hospital cannot have different standards of care for patients.Seriously, get a copy of this bill of rights and go through item by item and quantify/qualify whether and how you think it was either met or not and then write that letter. When you send it, don't forget to copy the president of the hospital board. They need to know their quality of care is being compromised, no matter how seemingly insignificant it may seem.When we've had bad experiences at our hospital (also a teaching hospital), I've actually picked up the phone and made calls about it.Wishing you resolution. And a more meaningful evaluation at some point in the future!

It takes a team to diagnosis ASD. Not just a psychologist. What they saw was a snapshot in time with one inexperienced clinician and extenuating circumstances that made the admininstration of the Sanford-Binet invalid. Sorry teaching in my opinion. Sorry for what you and your son had to experience, and now process.

I actually feel nauseous. What a horrible way to treat a parent and child. Honestly, I think they were conducting the whole thing like an experiment with you and Ethan as subjects. And in that way, they should have made sure they had your 'informed consent'. I think you have a case to bring their behaviour in front of ethics committee of the hospital.We deal with students all the time, but its done in an open and honest setting usually where the most important part of the session is the child, not the clinicians.

Just to be clear, he did have an ADOS performed a few months prior to the psychology portion of the testing. Everything was very drawn out as there such long waiting lists for this type of evaluation. The psychologists did seem underprepared because they asked about the ADOS and told me we needed one done, even though it was already done and in his records. As for the consent, I know I signed a bunch of paperwork, and I'm sure that somewhere in that pile of small print they covered their bases...it's just that the method they chose for the diagnosis portion of the visits just seems entirely inhumane and I'm not sure that the teaching hospital portion of the paperwork would have been super explicit as to just HOW incredibly invasive the methodology would be. I spoke to a good friend about this, he is a psychologist so his perspective was interesting. He felt like it's just a really difficult situation because this student has to be put in these situations in order to learn and her instructors really do need to observe as well. It's just unfortunate for the parent to have to go through with it, but from his point of view it's unavoidable in a teaching environment.

Reading your post reminded me of the similar experience I had at the Child Development Center affiliated with the Ivy League school in our city. It was a traumatic, dehumanizing experience for both me and my son, though completely "by the book". I am not sure why simple compassion, kindness and understanding for the emotional trauma families experience in these situations are not considered important. Kind thoughts and hugs to you and your son as you navigate through.

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